Creating community for families of children with special needs

One of Amanda Leeder’s favorite moments from her MOMentum Trip was on Friday night, when all of the 250 women from North America gathered together for Shabbat dinner and recited the blessing of the children.

“Adrienne Gold Davis shared that there’s nothing more powerful than a mother’s prayer, and that you can pray from anywhere,” Amanda recalled. “So there were these 250 women standing together, blessing their children, and sending out so much love. It just brought tears to my eyes.”

Amanda has three children with disabilities, including a son who is severely disabled and uses a wheelchair, so she often feels isolated from other moms who don’t understand her challenges. But over the course of the trip, she heard stories from a mother who had lost a child, women dealing with divorce, mothers who were caregivers for their own parents, and moms facing many other difficulties. She understood more deeply that each mother is fighting her own unique battle.

A moment to rest

One of the biggest challenges for families with severely disabled children is finding time to rest and take care of themselves. Amanda has a PhD in developmental psychology, and she worked for years at a school for students with autism. She has also studied disability issues, so she knows both the research and the lived experience about how isolating it can be for families.
Amanda was worried about taking the time away from her family to go on the MOMentum Trip, but it also felt like the right time for her to take some time for herself amidst the chaos of daily life.

“Eve, our bus leader, told us that Israel is the charging station for Jews,” Amanda said. “And I definitely felt that. I came back totally charged and full of love and positivity.”

One of the classes that sticks out for Amanda included the teaching from Pirkei Avot, “You are not obligated to complete the work, but neither are you free to desist from it.” Sometimes, while dealing with the needs of children with disabilities, her life has felt like an insurmountable mountain. But Amanda said the Momentum classes on subjects like shalom bayit, or peace in the home, helped her see the bravery in engaging every day and facing her challenges bit by bit.

Amanda said she returned reenergized emotionally and spiritually. “With all of my family’s challenges, our religious identity kind of got left behind,” Amanda said. “I came back feeling like I knew how to lead my family in Judaism. It became so clear that all these Jewish values we explored were inside me the whole time.”

A community of support

Amanda has two sons on the high-functioning end of the autism spectrum, and her middle son, 6-year-old Kobi, has a genetic disorder called CDKL5. Kobi suffers from epilepsy, needs a feeding tube, is categorically blind, and uses a wheelchair. He requires around-the-clock care. Amanda calls it “extreme parenting.” She also says Kobi is “one of the most handsome boys on the face of this earth.”
Caring for severely disabled children can be isolating for families, because it’s hard for anyone outside to understand how much emotional and physical energy is needed for this type of caregiving.

On her MOMentum Trip, Amanda felt a true support system and sense of community with her fellow Momentum sisters. “These women were able to hold so much space for me, even though none of them are dealing with this challenge,” she said.

Retreats for families of children with special needs

Now, Amanda wants to bring that sense of community to families caring for children with special needs. After her MOMentum trip, Amanda took part in a training with Dr. Barry Prizant, a national leader in autism research, to learn about running retreats for families of children with special needs.

“When I came back from Israel, I really felt like it was my time to start building something,” she said. Amanda works part-time as a music teacher at her son’s school, and said holding a 9-to-5 job is out of the question given her children’s needs. She’s been looking for ways to build her own career and advance some of the issues that she feels passionately about and knows there is a huge demand for supporting families with special needs kids through retreats.

The types of retreats she wants to run have two main goals: They give parents a bit of a break and an opportunity for self-care, and help them find support and community with other parents in similar situations. Right now, she’s in the planning phase, and ultimately, she hopes to run two retreats per year.

Amanda said she feels uniquely placed to help other families navigate this challenging reality, and she’s taking inspiration from Momentum’s leadership.

“The women who started Momentum saw that moms are this huge, untapped resource, and when women are inspired, they become powerhouses,” she said. “Families with kids with special needs are also an untapped resource, and I want to find ways to support and empower them, just like Momentum has done for me.”